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6708370 tn?1471493810

And now, we wait

I had a much anticipated consult with my Doc yesterday about what is next for me with Hep C and cirrhosis. A "little" Ascites 3 months ago (though you probably wouldn't notice and not enough to warrant Paracentesis) and Edema that has gone away entirely. 2 months of detox diet, more exercise, no alcohol or Advil. (Most) Blood tests are all close to normal and continue to improve steadily and MELD dropped from 12 to 10. So, the problem is, what to do next? I geared myself up for a Hep C regimen that would include Interferon - hopefully for 12, not 48 weeks but now there are the new drugs that will be out in 9 months or so and new, less intense treatments just on the horizon. My doc says we should wait a few months and do blood work again. Meantime, I am plagued by constant fatigue. Am I just being impatient to have a more concrete plan and timeline? Because of the cirrhosis, I could go from not so sick to Very sick if something were to go wrong at any turn. I know there are people out there who are much sicker than me. I have a consult with another hepatologist next week but no one seems to want to give me what I really want : A LIST -  here are 5 courses of action we could take and here are the pros and cons of each one
30 Responses
338734 tn?1377163768
With a MELD score, I imagine you may be on the list for transplant. Treating with DAAs to bring a patient to UND prior to transplant has been successful in preventing reinfection of the new graft. No interferon required. This a possibility?
338734 tn?1377163768
With a MELD score, I imagine you may be on the list for transplant. Treating with DAAs to bring a patient to UND prior to transplant has been successful in preventing reinfection of the new graft. No interferon required. This a possibility?
6708370 tn?1471493810
I am C 1a so, hafta do the Interferon, sadly. At least for now
Avatar universal
Treating for 12 weeks with interferon would not be that bad. From everything that I have read it will be at least 12 months before the all oral DAA's could be here as they should be submitted sometime in the first quarter of next year then you have about and 8 month wait for approval.

Best to you.
Avatar universal
Have you considered doing off-label Olysio & Sovaldi?  Several people are doing that as both are approved now!

Ask your doc if you're a good candidate for it.  Be aware, that you should take the new enhanced Genosure test (by Labcorp) to determine if you have the polymorphism Q80K.  It greatly reduces the effectiveness of Olysio as Olysio is a 2nd gen protease inhibitor and susceptible to resistant variants.  Because Sovaldi is a RNA polymerase inhibitor, it has a high barrier to resistance.  

If you can afford to wait, you might want to wait for the crucial NS5A inhibitors, Daclatasvir or Ledipasvir to take with the Sovaldi. They should be out in 2014.  Also, the FDC (Fixed Dose Combination) of Sovaldi & Ledipasvir (i.e., one pill) has been designated as a FDA "Break Through Therapy" recently.  It should also be out in 2014.

http://orphandruganaut.wordpress.com/2013/08/23/gilead-sciences-receives-19th-fda-breakthrough-therapy-designation/

Good luck,
HepCat
...
446474 tn?1446351282
What to do next?

Generally speaking based on the facts you have presented you should be treating your hepatitis C soon. Someone with cirrhosis should not be waiting a year for interferon free treatment to be available. You are still compensated and should treat with one the new treatments soon to prevent further liver damage from the virus. Should your liver decompensate while waiting for new treatments, it may be too late to treat your hepatitis and then the only option will be a liver transplant. You have the most options you will ever have now. As your liver disease advances less options will be available. In my opinion you should be pro-active now, 'waiting' can be a poor choice for someone with cirrhosis. You still have time cure your HCV and prevent it from causing irreversible damage to your liver.

I would imagine that any hepatologist will tell you the same.

Have you seen a hepatologist at CPMC or UCSF yet?
They will treat you with the best HCV treatment for your situation and monitor you liver status during the treatment.There are many people here in the Bay Area who are going to be treating soon in 2014 with the new treatments. We are gearing up for it at UCSF so I would recommend getting set up to treat with a hepatologist with a plan for treating in place as soon as you can.

Here is UCSF's clinic for treating hepatitis C
Liver Disease and Liver Transplant
350 Parnassus Ave., Suite 300
San Francisco, CA 94143
To schedule your first appointment at the Gastroenterology and Liver Clinic, please fax the following information to (415) 353-2407:
* A referral letter, including your current diagnosis, from your primary care doctor or GI specialist.
* All related doctor's notes, and lab and test results. Ask your GI.
* Copy of your insurance card (front and back).
* Your contact information, including mailing address and phone numbers.
If you have any questions, please call the clinic at (415) 353-2318."

Best of luck to you!
Hector

Avatar universal
A MELD score of 10 is not too bad, but as Hector mentioned, that could change at any time.  An increase in portal hypertension could cause more severe ascites, more severe edema, bleeding varices, etc.  A build up of toxins could cause hepatic encephalopathy, any of which would make you much more ill and cause an increase in your MELD score, which of course you do not want.  
If you are not already being seen at UCSF, that is where you need to be, given that you have Cirrhosis that is on the border of decompensating.  Make sure you have an excellent hepatologist familiar with Cirrhosis and Hep C.  You should be followed at least every 3-6 months to screen for liver cancer and to watch for further signs of decompensation.
Not sure I can put together a list of options and pros and cons.  I don't know if you've previously treated or not.  1) If you haven't previously treated, treat now with sofosbuvir, ribavirin, and interferon, and do it as soon as possible; 2) if you have previously treated and failed, ask your hepatologist if he/she is able to treat you off label with interferon free drugs; 3) look for an appropriate clinical trial; and 4) wait a year for all oral meds, but run the risk of decompensating and getting very ill.
Good luck and keep us posted.
Advocate1955
Avatar universal
I agree with Hector and Advocate. The sooner you treat the better.
My husband has recurrent Hep C after liver transplant and now has cirrhosis in the new liver despite his  AST and ALT being  pretty close to normal range.  He will be starting Sovaldi and Ribavirin for 24 weeks (no interferon) as he is not eligible for the interferon. We are aware and his doctor confirmed that  he has about a 70 % chance for a cure.  At least it will give his liver a break from the Hep C and bring us closer to the other new treatment which has a higher cure rate.

Might this not be an option for you if you are not able to take the interferon?
My husband had a very hard go of it with the triple treatment with Incivik. He had
6708370 tn?1471493810
Thanks everyone for your comments. I guess the real problem is that I am not pleased with my doctor and I am really trying to get into UCSF. I tried to reach the clinic today and left them a message but was never called back so perhaps I will just walk up there tomorrow to see if I can make an appointment. Even if I have to pay out of pocket for a consult.

But my doctor feels that he is having these discussions with "the team". Why am I not at the table? This is my life after all, not a broken carburetor.

Here is the last message that my doctor sent to me:

"I am sorry if things were not clear. We have been working together the last two months on the large number of pre-liver transplant evaluation tests. No problems were identified that would prevent you from having a further transplant evaluation, though your liver is stable to improved at this time. We discuss the options available extensively and regularly for our patients within our GI team at KP San Francisco, with the KP Liver Transplant Team and with the UCSF Tranplant team. Thus, we have had the discussions you mention below regarding your care. I had been in contact with the UCSF service regarding trials available - those were the ones we talked about - see also below.

The plan we discussed is:

1. The currently available medication treatment regimens for your virus type require interferon. I would not recommend you receive this until you have liver transplant as a backup, particularly since your labs have been stable to improved over the last couple months. The liver transplant board stated you can be evaluated for liver transplant once you are off all alcohol and other drugs such as marijuana for six months. (Note that I have not had a drink nor smoked medicinal cannabis since my diagnosis on October 5th)

2. The only current alternative to interferon-based treatments for your type of hepatitis C at this time is an experimental trial. When we first met two months ago and met again last month, we talked about the possibility of experimental non-interferon trials. On those occasions you stated you were not interested in experimental trials, (I don't recall ever saying this) though on our visit this week my understanding is that you are potentially interested. The trials open at UCSF when I recently checked for your situation are for patients who are pre-liver transplant/on the transplant list. Thus, you would need to be on the transplant list for these (this relates to #1 above, that there will be some months for this).

3.Unfortunately, the presence of cirrhosis can still cause fatigue and some of the the other symptoms you are experiencing. There is no easy fix for this - it is part of having cirrhosis. I wish we had better treatments.

5. For your foot pain, would avoid NSAIDS and narcotic pain medications. You can seen Dr. Herman to determine if other treatments are available. You can take up to 1000 mg of tylenol per day.

I understand it is frustrating that there is not an easy and immediate fix for your cirrhosis, and that the existing treatments may not be desirable. Happy to continue to work with you on what is available.

************

I just don't feel like my doctor is being an advocate for me and when I say things like, I really believe I should see a hepatologist as part of our team or someone in my support group said...., he seems to get mildly defensive. So, as far as I understand, I have to be on the transplant list before treatment will be considered. And, I guess I need to wait at least 3 more months for a drug test or something that will prove that I have not had any alcohol or cannabis? And, is it true that I need liver transplant as a backup to undergo treatment for Hep C? Is this because of my cirrhosis?

Thank you for all your support and good advice. I want Hector's doctor!
Avatar universal
"And, is it true that I need liver transplant as a backup to undergo treatment for Hep C? Is this because of my cirrhosis?"

I'll answer your question with my husband's experience.  My husband had advanced cirrhosis when he attempted triple treatment with Incivik. It took a huge toll on him and he became much sicker to the point where he developed end stage liver disease (including hepatic encephalopathy, varices in the esophagus and stomach, serious edema,
ascites, and portal hypertension). All of these are life threatening. That is why he needed to be on a liver transplant list before treatment was started.

Hope his experience gives you some better understanding of your own situation.
5536514 tn?1373503602
I am not doing very well, due to my recent trauma.  I cancelled my jan 3rd appointment with transplant center and proceeded to eat everything in sight (mostley goodies).  I am getting fatter and more tired as days go by.  I have also developed Charlie horses in my legs a lot and then constantly hurt.  I also have a lot of headaches, which is unusual for me.  I am taking painkiller every day,which is also unusual for me.  (ibruprofen)  800mgs.  I am having an mri and bloodwork and kidney testing before my other appjointment  on jan 22.  so that way I have all the results already for them.  I am so scared that I am going to die  It's just too much for me.  I feel like giving up and I know that is not an option, because my family needs me right now.  thanks guys   I pray that the new year will be good to all of you great people.   So Blue
6708370 tn?1471493810
Hey girlfriend!
Don't do it! Don't give up and def don't take Ibuprofen! Advil had been my lifelong friend but I find that a little Tylenol and meditation is helping control my pain. And, this seems counter intuitive when one is so tired, but a long walk helps both pain and fatigue for me. If you want to talk offline, PM me and I will call you. I sometimes feel like I am dying too but then I remember that everyone dies and so I try to make each day one that opens my eyes to new things or makes me appreciative of my friends and family. Music too. Music is good for the soul. Hang in there!
Avatar universal
Hepcandme, it sounds like your gastroentrologist is doing a good job actually.  Frequently gastroenterologists work together as a team to decide when and if to make a referral to a clinical trial, to a hepatologist, or to be evaluated for a transplant.  That was definitely the case for my husband.  Gastroenterologists who are familiar with Hep C treatments can take care of Hep C patients up to a certain point.  It sounds like your doctor is trying to take care of you, guide you in whether or not to treat your Hep C, whether or not to try to get into a clinical trial, and when to be evaluated for the transplant list.  
1.  He is right in saying that you probably should not treat using Interferon, because it can cause your liver to decompensate further or fail completely.  He is right in saying that you must have been off alcohol and marijuana (and recreational drugs) for at least six months before you can be approved for the transplant list.  I agree with him that it would be best to have gone through the approval process and be approved for a transplant before you try any Interferon based treatment plan, although it would be wisest not to try one, because if your liver fails due to the treatment meds, and you are not already approved for a transplant, you would not be able to receive a transplant, and you could die.
2.  It sounds like he is trying to respect your previous wish to not be considered for a trial, but now that you've expressed a possible interest, he will probably continue to review the trials.  You can also review them yourself at www.clinicaltrial.gov and search for one for which you would be eligible.  My hubby and I have been searching for one for several years, but he has not been eligible because he has Cirrhosis, has previously treated, but is not pre-transplant (not sick enough to be listed).
3.  Your doc is right in saying that as time passes with Cirrhosis, you are likely to feel more and more fatigued.  This has happened to my husband, especially over the past 3 years.  There are currently no medications or trials that he can do to treat his Hep C, and so we wait, and live with the fatigue and other symptoms of Cirrhosis.  There is nothing else we can do, other than make sure he follows doctor's orders for follow up appointments, imaging, and being liver friendly.
4.  He is right in saying stay away from NSAIDS and narcotic pain medications as they can further damage your liver.  You can take Tylenol for pain.

The question is when your gastroenterologist should refer you to a hepatologist.  Since you have Cirrhosis, it would seem appropriate for him to refer you now.  The hepatologist could oversee your care, monitor you for further decompensation and liver cancer, and keep you appraised of any treatment opportunities that become available, but there are none that are Interferon free right now.  The hepatologist could also send you back to the gastroenterologist for the labs, imaging, etc.  If they work closely together, the gastroenterologist can handle most of that, with the hepatologist overseeing until such time as a treatment or a trial becomes available or a transplant is needed, then the hepatologist would be your specialist managing your care.

To be honest, I don't see any errors that your gastroenterologist is making.  It does take some time to get in to see a hepatologist in a transplant center, and it may take a referral from your gastroenterologist.  If you're not comfortable with him, then you should ask for the referral to the hepatologist and let the hepatologist monitor your care from here on out.  Most gastroenterologists are not well enough trained to monitor a patient with decompensated Cirrhosis, so that would be the ideal situation.  But again, I don't see anything wrong with the advice your gastroenterologist has given you.

You need to be on a liver friendly diet, not taking iron, restricting sodium, and monitored for liver cancer and further decompensation, so if you don't like your gastro, ask for a referral to the hepatologist.  That way, if/when your liver decompensates further, you will be in the right place to be evaluated for a transplant, and/or in the right place to participate in a trial.

Advocate1955
6708370 tn?1471493810
Thanks for your thoughtful comments Advocate

I go back and forth between thinking I am Really sick and could die soon (being Listed makes it seem even closer to home) and then, maybe I'm not so sick. My GI doc says things like, You are not dying. But then, he says things like, Interferon treatment is not so bad. Sure you can keep working

As appreciative as I am for the support and the Truth I get here from the group, I wish I was not a member of this club. And, as important as I think it is to be informed, I sometimes wonder if spending hours each day researching and worrying about this disease is making it more difficult for me to stay positive. I guess it is something that all of you have faced.

Here's the joke that my son and I share: After realizing in short order when most people ask, How are you? The correct response is Fine, thanks for asking because very few people care to know the sordid details about your horrific disease.

The punch line of the joke is: Well, You look Great! (Always - even from people who know I am sick)

Or, in one instance, when we met with a friend who is part of our hospital insider support network, You Look Great! One would never guess you have advanced liver disease!

Sigh....
Avatar universal
I think everyone living with Hep C and Cirrhosis, especially advanced Cirrhosis, has these feelings.  It's a daily struggle to be optimistic when you feel fatigued and sick, and your future in uncertain.  I think that if I were you, I would ask for the referral the the hepatologist, and then just follow the advice the hepatologist gives you.  He/she is the best equipped to help you take care of your liver.  I'm not sure at what MELD score they are transplanting in California, probably pretty high.  In Washington, they are transplanting at about MELD 16.  That makes me think that at MELD 10, you are doing pretty well.  At this point, it seems as though you have a balancing act between treating your Hep C as soon as you can safely do so (without decompensating your liver further) and keeping your liver functioning as well as it can, until you are sick enough to need a transplant.  There are others on this forum and the Cirrhosis of the Liver forum who are in your situation (mckansas, ejoli, heart_in_the_keyes, bluebird), sick (too sick to take current Hep C treatments), but not sick enough for a transplant.  The sooner you get connected to a hepatologist in the transplant center, the better.  That way when new treatments become available that are safe for your liver, he/she will treat you.  And when you get sicker due to your liver disease, you will already be in the right place to begin the process for being approved for transplant.  It is a long, long process, so being seen by a hepatologist at the transplant center now is the best place for you to be.
Don't be discouraged.  Look at Hector, who has been at a MELD in the mid-30's for a long time and just got his liver transplant 6 weeks ago.  There is always hope, your liver is still functioning, and the blessing is that you are near a transplant center.
Create a support system, whether it be friends, a forum, a formal support group, or family.
Live your life in spite of Hep C and Cirrhosis.
Stay informed.  Knowledge is power.
Advocate1955
6708370 tn?1471493810
Thank you
Made me cry but in a good way
I have only been at this for 3 months and I can't begin to express how thankful I am that I found this group. The courage and optimism I find here is just remarkable given the challenges that all of you face every day. It also is reassuring to know that these feelings that I have of despair and longing for an easier path are shared by others.
I do have a great support group of family and friends but, as I said, they don't really want to know the details. Thanks everyone for sharing all the sordid details! And thank you for being there for me
Avatar universal
heocandme,

You asked for possibilities.  Did you see these 2 suggestions?  It's meant as food for thought...

"Have you considered doing off-label Olysio & Sovaldi?  Several people are doing that as both are approved now!

"Ask your doc if you're a good candidate for it.  Be aware, that you should take the new enhanced Genosure test (by Labcorp) to determine if you have the polymorphism Q80K.  It greatly reduces the effectiveness of Olysio as Olysio is a 2nd gen protease inhibitor and susceptible to resistant variants.  Because Sovaldi is a RNA polymerase inhibitor, it has a high barrier to resistance.  

"If you can afford to wait, you might want to wait for the crucial NS5A inhibitors, Daclatasvir or Ledipasvir to take with the Sovaldi. They should be out in 2014.  Also, the FDC (Fixed Dose Combination) of Sovaldi & Ledipasvir (i.e., one pill) has been designated as a FDA "Break Through Therapy" recently.  It should also be out in 2014."

http://orphandruganaut.wordpress.com/2013/08/23/gilead-sciences-receives-19th-fda-breakthrough-therapy-designation/

Good luck,
HepCat
...
6708370 tn?1471493810
I did see this and will forward to my doc when he returns on the 6th. Thanks for sending. This is what I am talking about when I rave about how well informed this group is.
I always come to our GI consult with a long list of questions and possibilities but, I dunno, it seems like my doctor is slightly annoyed with a patient who seems so well informed from information that she found on the internet or through her support group. I can't say that he ever has gone into great detail about questions about a test for example (though I have, of course, researched the test extensively) but instead answers with - "looked pretty good. Blood work shows continued improvement." Maybe he doesn't have enough time? I want details and homework too!
In my doc's defense, I have seen him for a consult 3 times. He also performed a colonoscopy and a varices endoscopy on me but there wasn't a lot of conversation going on that day
Wish me luck on his giving me a referral to the liver specialists at UCSF soon!
Avatar universal
Hopefully being designated Break Through Therapy  will fast track approval
even faster than expected.  The trial results are incredible for this combo pill.

http://www.fda.gov/regulatoryinformation/legislation/federalfooddrugandcosmeticactfdcact/significantamendmentstothefdcact/fdasia/ucm341027.htm

Nan
Avatar universal
Great!  Just wanted to make sure my message didn't get lost in the noise!

Best to you,
HC
Avatar universal
More about Break Through Designation

http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM358301.pdf

HC
...
4806014 tn?1424505478
I have cirrhosis too and your GI doc sounds just like mine in the way he explains things.  I have kaiser in the bay area but not SF kaiser.  I recently asked my GI dr if I could get a second opinion referral to see a hepatologist regarding the hcc tests that kaiser has been monitoring over the years. I was surprised he said yes, no problem. I paid out of pocket once to see a UCSF dr and believe me ... you don't want to go there, it's too expensive. Your GI dr. should be able to do this as kaiser has an outside referral dept. and they are working closely with UCSF now regarding their cirrhosis patients to get advice. Go for it girl, and don't worry! Good advice from team Medhelp as always.
6708370 tn?1471493810
But if you are referred from Kaiser, then they continue to pay the bills, right? Even if they are contracting with UCSF?
I sometimes wonder if I would be better off working 1/2 time - then I wouldn't be eligible for health insurance coverage at my work - and getting insurance through the exchange?
Hector posted a list of all the insurance accepted at UCSF not too long ago. After talking to a friend last night about everything he and his his wife went through at the end of her life (she died from liver cancer brought on by Hep C), I realize that there is an entire world of paperwork to wade through re: the best insurance coverage,and that, mathematically, you have chosen the right plan, deductibles, limits on out of pocket expenses, etc.
At least they can't reject you because of pre-existing conditions now. Thank you ObamaCare!
It made me sad to think that despite this Other aspect of my illness that I have not even delved into yet, I will get the advice and the insurance I need but that someone who is uneducated, intimidated or unable to understand their options, well, they probably just die.
4806014 tn?1424505478
Getting a referral from kaiser means they pay for the appointment for you to see a hepatologist  and the hep dr explains to you how they see your situation and they advise your GI doc on what steps to take next.  It's a good way to be in the loop, to be better informed. It's frustrating to deal with the kaiser dr's as they are told to be obscure. My last appt I had at ucsf recently I learned that kaiser is developing a closer partnership with ucsf than they had in the past which is very good news.  I am waiting to find out about which treatment to go on since I had complications with triple tx last May.My GI dr is seeking advice from ucsf dr regarding this. The wait has been long over the holidays as ucsf is most likely very busy treating the very sick with new drugs.

The insurance decisions are complicated, get someone who can advise you about these decisions before you jump in to another plan. I have found in the past that switching to  part time at work can cause more stress to not have as many allowed days off as when I worked full time. With part time... if you take more time off then allowed which is usually less hrs  with part time, it can cause pressures from management for you to quit work .  Your situation might be different. My husband looked at the health exchange to try to get  me to switch to a PPO plan and after he looked at what they offered
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